Children With Special Needs and The Effect On The Family

Eastern Illinois University
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Masters Theses Student Theses & Publications
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Children with Special Needs and the Effect on the

Family
Taylor N. Downey
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Children with Special Needs and the Effect on the Family
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Running head: CHILDREN WITH SPECIAL NEEDS AND THE FAMILY
Children with Special Needs and the Effect on the Family
Taylor Downey

CHILDREN AND THE FAMILY 2
Dedication
This research is dedicated to all individuals with special needs and their families. You may
face difficult times but the love and support you have for one another will conquer all.
Acknowledgements
I would like to recognize many individuals in my life for their support and love through
this process:
My son: Bodhi, you have brought so much joy and happiness into my life. I am so
blessed that you are my son. I hope all of my hard work pays off and I am able to give
you the life you deserve. You have been my biggest motivation to finish my thesis and
graduate. I love you with all my heart.
My parents: You have always encouraged me to do what I want to do in life. You have been
by my side through every grade, college, and graduation. I hope I have made you proud.
My brother: Payton, you have inspired me to pursue research in children with special
needs. You have taught me so much in the short time you have been part of our family.
You have showed me love and happiness in the simple things in life.
My professors: I would not have been able to write this thesis without the help and push
from all of my professors at EIU. Because of every single one of them, I am able to say I
am a better person, student, and professional than the day I was when I started graduate
school. You have all made my time at EIU a memorable one.

Abstract
The purpose of this study was to examine the family unit after the addition of a child with
special needs. Additional stressors, positive and negative emotions were also explored in
this study. The results of this study suggested that all families have different experiences
with their child but they may feel similar emotions, feelings, and face the same
characteristics depending on their child's diagnosis.

Table of Contents
Dedication --------�-
2
Acknowledgements _____ 3
Abstract -------�--�
4
Table of Contents 5-6
Chapter 1: Introduction 7
Need for Study 7
Purpose of Study 8
Research Questions/Hypotheses 8
Definitions 8-10
Chapter 2: Review of Literature 11
Special Needs 11-15
Diagnosis 15-16
Stress 17
Relationship Strain 18-20
Resources Available to Families 20-21
Family Stress Theory: ABC-X 21-25
Conclusion 25-26
Chapter 3: Method ______ 27
Design of the Study 27
Sample Selection 28
Instrument Description 28
Procedure for Data Collection 29

Data Analysis 29
Chapter 4: Results 30
Instrumentation 3 0-31
Data Analysis 31
Interview Responses 31-44
Summary 44-45
Chapter 5: Summary of Study 46
Discussion 46-48
Limitations 48
Recommendations for Future Research 48-49
Recommendations for Professionals 49
Conclusion 50
Appendix A: Downey Survey 51-52
Appendix B: Welcome Letter 53
Appendix C: Informed Consent 54-55
References 56-59
Chapter One
Introduction
When the family dynamic changes with the addition of a child, things can become
intimidating and stressful. First time parents tend to worry about bathing procedures, diaper
changing, feedings and so many other parenting customs. However, the addition of a child
with special needs can affect the family beyond the basics and is often overlooked. There
are challenges associated with a child's diagnosis that can add a significant amount of
physical stress and psychological stress for not only the parents, but for the entire family
(Spratt, Saylor, & Macias, 2007). Each diagnosis is different and can cause varying stress
factors on the family. Stress is a common experience for any and all parents. When there
are high stress levels involved, it can lead to an increased use of undesirable parenting
strategies, suppressing and voicing problems, as well as lower social skills within the
children (McLennan, Doig, Rasumssen, Hutcheon & Urichuk, 2012).
Need for Study
There is little research that explains how a child with special needs affects the
family unit. It is important to understand all aspects of the diagnosis process as well as
the family after the diagnosis occurs. In addition to the diagnosis, a key factor to
remember is that all diagnoses are different and each individual person and diagnosis
have their own unique characteristics. Having a child with special needs can create
changes within the family, but there are resources for families to utilize. This study was
needed to examine how the family is impacted as well as what resources are beneficial to
families that have a child with special needs. This study attempted to contribute to the
growing body of research based upon the increasing number of individuals diagnosed
with special needs.
Purpose of the Study
The purpose of this study was to explore how having a child with special needs
affects the family. In addition, the stressors within the family were examined. The
emotions and feelings that arise surrounding a diagnosis were investigated.
Research Questions
The overarching research question that guided this study was the following:
How does a child with special needs affect the family?
Research Hypotheses
Hl. Additional negative family stressors can arise from having a child diagnosed with
special needs.
H2. An array of positive emotions can arise from a child's diagnosis.
H3. An array of negative emotions can arise from a child's diagnosis.
Definitions of Key Terms
Terms used throughout this study include:
1. Special needs- "a wide range of physical disabilities, medical conditions,
intellectual difficulties, or emotional problems, including deafness,
blindness, dyslexia, learning difficulties, and behavioral problems" that
negatively impact functioning in some manner (dictionary.com)
2. Operational Definition of Special Needs- "Children with identified
disability, health, or mental health conditions requiring early intervention,

special education services, or other specialized services and supports"
(ccfc.ca.gov)
3. Mild- "A mild intellectual disability is defined as an IQ between 50 and
70. A person with a mild intellectual disability participates in and
contributes to their families and their communities and may live and travel
independently but will need support and help to handle money and to plan
and organize their daily life. " (CDDH.monash.org)
4. Moderate- "A moderate intellectual disability is defined as an IQ between
3 5 and 50. A person with a moderate intellectual disability understands
daily schedules or future events if provided with pictorial visual prompts
such as daily timetables and pictures and may develop independence in
personal care." (CDDH.monash.org)
5. Severe- "A severe or profound intellectual disability is defined as an IQ
below 35. A person with a profound or severe intellectual disability
requires lifelong help with personal care tasks, communication and
accessing and participating in community facilities, services and
activities." (CDDH.monash.org).
6. Relationship strain- "to be subjected to tension or stress; suffer strain"
(dictionary.com)
7. Support group- "a group of people who meet regularly to support or
sustain each other by discussing problems affecting them in common"
(dictionary.com)
Chapter Two
Review of Literature
Parents of children with special needs often experience increased levels of stress
compared to parents of children without disabilities. "Excessive caregiving demands,
lack of child responsiveness, and unusual behavior patterns have been closely associated
with both increased stress levels and depression in the parent of chronically disabled
children" (Slavik Cowen & Reed, 2002, p. 272). This study attempted to examine how a
child with special needs can affect the family as a unit. This chapter will address
contemporary literature related to children with special needs. Terminology and
characteristics related to special needs, the process of diagnosis, stress, emotions/feelings,
relationship strain, Family Stress Theory and resources will be discussed.
Special Needs
Autism, Down syndrome (DS), and Cerebral Palsy (CP) are just a few of the
diagnosis that will change the dynamics of a family forever. It is important for parents,
and professionals to be educated on specific needs and their characteristics when working
with families. The number of children diagnosed with special needs such as, Autism, DS,
and other neurological disorders continue to increase each year, the disruptions in the
equilibrium of those connected to the child are unmistakable, as well as the costs to
provide care for the child (Brinker, 2011).
As reported by the Autism and Developmental Disabilities
Monitoring Network in April of 2010, as many as 1 out of
110 children are born today with an autism spectrum

8. Respite- "to relieve temporarily, especially from anything distressing or
trying; give an interval of relief from" (dictionary. com)
9. Stress- "to subject to stress or strain" (dictionary.com)
10. Feelings- "an emotion or emotional perception or attitude"
(dictionary.com)
11. Diagnosis- "the process of determining by examination the nature and
circumstances of a diseased condition." (dictionary. com)
12. Emotions- "any strong agitation of the feelings actuated by experiencing
love, hate, fear, etc., and usually accompanied by certain physiological
changes, as increased heartbeat or respiration, and often overt
m anifestation, as crying or shaking" (dictionary .com)
The following chapter will address the contemporary literature related to the focus ofthis study.
disorder. That number has increased from 1 out of 150,
which was only five years ago (Brinker, p 10, 201 1 ).
With the increasing numbers, more families are affected by the challenges of
having a child with special needs in the home. From specific health issues, negative
behaviors, and diagnostic testing, children with special needs go through a range of
challenges in their first few years of life and well on into adulthood. However, not only
are the children learning how to manage their diagnosis but the parents and other siblings
are as well.
Autism. "About 1 in 68 children were identified with Autism based on tracking in
11 communities across the United States in 2012" (Center for Disease Control, 2016).
Autism spectrum disorders (ASD) have their own unique characteristics. Individuals may
face "social-interaction difficulties, communication challenges and a tendency to engage
in repetitive behaviors" (Symptoms, n. d.). Symptoms, and their severity, may vary
widely across these areas, from mildly challenging to more severe.
Children diagnosed with Autism often face social challenges and struggle with
every day human interactions. Children may fail to respond to their name, have no
interest in the people in their surroundings, and have delayed speech. Difficulty in
regulating emotions may also be a challenge. Someone who does not have knowledge on
Autism may see these emotions as "immature behavior" or inappropriate outbursts. These
children tend to lose control and become frustrated in many situations. When a child is
frustrated, this can lead to "self-injurious behaviors such as head banging, hair pulling or
self-biting" (Symptoms, n.d.).

Individuals with Autism tend to face challenges related to communication. Younger
children diagnosed with Autism are often delayed in speaking and using gestures. Some
significant language delays start early in an infant's life and many do not begin speaking
until much later in their life. Speech therapy is often used to help individuals with autism to
develop spoken language and work on their communication skills. Children who are non
verbal, use communication systems such as "pictures, sigh language, electronic word
processors or even speech-generating devices" (Symptoms, n.d.).
Repetitive behaviors is often a common characteristic of Autism in individuals.
These behaviors are seen as unusual and include, "hand flapping, rocking, jumping, and
twirling, arranging and rearranging objects, and repeating sounds, works, or phrases"
(Symptoms, n.d.). Children with Autism may spend more time lining up and arranging
toys than actual pretend play with them. Often times a disruption in these behaviors can
cause a child to be extremely upset because their routine and consistency is interrupted.
These repetitive behaviors can become obsessions and result in an extreme interest in
obj ects, numbers, and symbols.
Down syndrome. Each year, almost 6,000 infants are born with DS (Birth
defects, 2014). Almost half of these individuals will face a maj or mental health concern
during their lifetime. The most common of these health concerns include, "general
anxiety, repetitive and obsessive-compulsive behaviors; oppositional, impulsive, and
inattentive behaviors; sleep related difficulties; depression; Autism spectrum conditions;
and neuropsychological problems characterized by progressive loss of cognitive skills"
(National Down Syndrome Society, para. 2 n.d.).

Situational Anxiety is a major issue in individuals with DS. Anxiety occurs during
transitions from one place to another, or if experiencing new situations and surroundings.
Examples that may cause anxiety include, "transitions from home to school, meals or bed
times, as well as being in an unfamiliar environment" (National Down Syndrome Society,
para 16, n.d.).
In addition, individuals with DS may show obsessive-compulsive symptoms.
When an individual with anxiety faces a disruption to a comfortable routine, they can feel
unhappy or fearful of situations, because they are accustomed to ritualistic behaviors. The
individual who is disruptive and oppositional tends to act silly, happy, and excited when
changes occur. In either situation these behaviors can be difficult for parents or caregivers
to manage.
Depressive symptoms can also occur in individuals with DS. They may show
social withdrawal, sadness, and the inability to enjoy once loved activities (National
Down Syndrome Society, n.d.). Often times these individuals never typically showed
signs of depression, according to their caregivers. A common issue that rises with
depression and anxiety is disrupted sleep, which causes issues distinguishing what is
causing the sleep issues.
Cerebral Palsy. "An estimated 8,000 babies and infants, plus 1,200 to 1,500
preschool-age children are diagnosed with cerebral palsy every year in the United States"
(Krigger, 2006, p. 91). CP is a permanent neurological disorder that occurs from brain
injury prior to the cerebral development being finished. The entire body can be effected
by CP. Decreased body movement, muscle control, muscle coordination, muscle tone,
reflex, posture and balance can all occur. In addition, fine motor skills, gross motor skill,
and oral motor functioning can all be impacted.
Physical impairments will appear slowly over time. Different limbs and the extent
of impairment will differ from one individual to another. Arms, legs, and the face can be
individually affected or the body as a whole. Those diagnosed also can lose the ability to
control their muscles. They can have issues contracting their muscles too much or too
little. This causes limbs to be stiff or forced into uncomfortable and painful positions.
Other complications such as intellectual impairment, seizures, and vision or hearing loss
are also common in individuals with CP (Definition of cerebral palsy: What is cp? n.d.)
Every case of CP is different and unique. "An individual may have total paralysis
and require constant care, while another may have partial paralysis and require little
assistance" (Definition of cerebral palsy: what is cp? n.d.). The timing of the injury plays
an important role or the severity of the diagnosis. The injury to the brain happens when the
brain is still developing, whether it is before birth, during birth, or immediately after birth.
Diagnosis
Every type of disability is diagnosed differently. Some can be clear and concise
and others may be more complicated and involve multiple steps such as observations and
collaboration from a team of professionals. There currently is not a medical test that is
used to diagnose Autism. Unlike a disability that is evident and presents specific
symptoms, autism is more difficult to diagnose because it is a spectrum of closely related
symptoms. There are specially trained doctors that administer an Autism-specific
behavioral evaluation. A typical evaluation for a diagnosis involves a multi-disciplinary

team of doctors including a pediatrician, psychologist, speech and language pathologist
and occupational therapist (How is Autism Diagnosed, n.d.).
The first step to diagnosis is often when parents begin to notice their child is
showing atypical behaviors, which seem unusual to them. These include failure to make
eye contact, not responding to their name, playing with toys in an unusual way, or
repetitive behaviors. Autism is a life-long condition, diagnosed children and adults benefit
greatly from interventions, or therapies, that can help them work on reducing these
symptoms and help them increase their daily life skills (How is Autism Diagnosed, n.d.).
The diagnosis for DS typically occurs at birth. Doctors recognize features
immediately after the birth of the infant. Features often include a "flattened face, upward
slant to the eyes, a short neck, abnormally shaped ears, and a single deep crease on the
palm of the hand" (Down Syndrome Diagnosis, n.d.). If DS features are present doctors
can perform a blood test which can confirm whether the infant in fact has DS. This test is
known as chromosomal karyotype, which means that the doctors will allow the blood to
"grow" for almost two weeks. Then the blood is examined under a microscope and they
will look for extra material from chromosome 21 (Down Syndrome Diagnosis, n.d.).
According to Krigger (2006), CP is diagnosed by observation of slow motor
development, abnormal muscle tone, and unusual posture. Physician's go through a
testing strategy and that is based on the development of symptoms, family history, and
other factors influencing the probability of the diagnosis. Since Cerebral Palsy is damage
that occurred to the brain, it cannot currently be fixed. There are treatment and therapies
that help manage the effects that occur on the body (Definition of cerebral palsy: what is
cp? n.d.).
Stress
The impact of parenting a child with a disability can be stressful and potentially
negative. This impact is not as severe as what is often believed (Staats et al., 2015).
Families that include a child with special needs can face additional stressors on top of the
traditional factors that occur. Once a child is born and the diagnosis has been made, many
emotions arise as well as the increase in stress levels.
Emotions/Feelings
The beginning months after the birth of a child can be an emotional and chaotic time
for parents. Feelings of isolation are common and there is a lot of concern for the future for
their family and their child (Kerr & Mcintosh, 2000). Those families that have positive
coping strategies have better adjustment to adapt to the stressors involved in raising their
child and understanding their disability. "The experience of receiving a prenatal diagnosis
often varies among parents, but any report encountering an array of emotions, including
stress, disbelief, sadness, anger, and confusion" (Staats et al,. 2015, p. 84).
Hope is a positive mindset that some parents have. It helps parents to transform
and reframe their lives around their child. Parents often report their lives are full of
empathy, hope. Love, care, compassion, and value, as result of having a child with
special needs. They often credit their child and the disability for their personal growth
(Staats et al., 2015).
Siblings also experience an array of emotions and feelings once there is a child
with special needs added to the family. Often times, siblings become more caring and
compassionate towards their sibling and others around them. Children may display
feelings of empathy towards their sibling. They also have a heightened appreciation for
their own health and abilities (Dyke et al ., 2009). Family resilience is another feeling that
siblings portray. Being placed in a situation such as this, the siblings are able to adapt to
the change and dynamic of the family and cope with the additional stress in the future.
From the negative feeling standpoint, some parents felt that their other children
had a sense of embarrassment in front of their peers because of their sibling's behavior.
Some parents noticed their children felt an increased burden and responsibility to help
care for their disabled sibling (Dyke et al . , 2009). These negative feelings may be
reduced when a child with special needs is born into a larger family because there are
more individuals to help provide care.
Relationship Strain
All aspects of the family are affected when a child with special needs is added.
This includes the family, parents, siblings, and friends. Family functioning is impacted in
both a negative and positive manner. Positive outcomes include an increased inner
strength, resilience, cohesion, and community connection. Researchers also noted the
negative effects on a family. These include strained marital relationships, financial
pressures, sibling adjustment, and decreased parent efficiency (Lindo et al. , 2016).
It is common for parents of the child to experience a strain on their relationship,
especially since they have a child who needs additional attention and care. Some parents
may have less time for each other after the child is born. "Family members who are tired,
depressed, or in need of health care often must sacrifice their own health and well-being
to meet the extraordinary care needs of their child when support is lacking" (Slavik
Cowen & Reed, 2002, p. 273).

Parents also noted that spontaneous and thought out recreational trips and the
typical family outings were limited. "Financial restraints limited family holiday
opportunities, educational opportunities and material goods" Dyke et al . , 2009) . These
circumstances cut out quality family time as well as time with other children which can
increase the negative effects for siblings.
In addition, parents of children with special needs tend to rely heavily on their
significant other for support. According to Staats et al. (20 1 5), parents of children with
DS have a lower rate of divorce than parents of children with another developmental
disability. Parents who are at a younger age and have less education are factors that
increase the probability of divorce. "In past research it has been suggested that there are
few differences in family and marital functioning when comparing families of children
with DS to families of children without disabilities" (Staats et al . , 20 1 5 p. 85) .
Not only are parents immediately affected by the addition o f a child with special
needs but siblings are as well. Siblings of children with a developmental disability often face
an adjustment period following a diagnosis. According to Biasi et al . (20 1 6), siblings may
have higher levels of depression and are at a higher risk for internalizing and externalizing
problems. In addition, siblings may face social and behavioral change problems, hassles with
sibling behavior, and distressing emotions such as guilt (Green, 20 1 3).
Having t o meet the high demands that come with having a child with special
needs parents may find themselves having little time to spend with friends outside of the
family. These relationships may suffer or they may become beneficial in decreasing the
stress levels in parents . Research states that parents of older children with a
developmental disorder have a higher rating of satisfaction with their friendships and
because of this relationship; they experienced less stress as a result (Lindo et al. , 2016).
Resources Available to Families
Often times, there are resources to help parents adapt to the lifestyle changes of a
child with special needs. These resources include, counseling, support groups, and respite
programs. Resources that are taken advantage of by families often have great success in
reducing the caregivers stress levels and worries.
Respite Program
This type of program is part of a comprehensive approach to early intervention as
well as preventing child maltreatment. Respite programs are often used by caregivers in
order to receive a break from the constant care of their child. These programs are seen to
help reduce caregivers stress (McLennan, Doig, Rasmussen, Hutcheon & Urichuk, 20 1 2) .
Respite programs are often taken advantage o f b y families and paid fo r b y a particular
program the family uses or is in contact with. Often times families are prioritized based
on their child's mental and/or developmental issues for respite care due to the fact they
may be experiencing higher stress levels than others.
Support Groups
According to Kerr and Macintosh (2000), "social support can be an effective
buffer against the stress and isolation faced by individuals in this population" (p . 3 1 0) .
Research suggests that parents have reduced stress levels when they are able to share and
compare their experiences with other parents/guardians who share a similar situation.
Parents who have contact with other parents of children with special needs, experience
influences that decreased their stress levels and also provide emotional, social and
practical support (Kerr & Macintosh, 2000)
Family Stress Theory: ABC-X
Reuben Hill's ABC-X model of family stress, is the foundation of family stress
theory. Family stress theory revolves around central components from Hill's model.
These components include, A as the stressor event, B, the family resources or strengths,
and C, as the family's perception of the event. When a family is unable to adapt or solve
the problem it can lead to a crisis, which is the X component (Smith & Hamon, 2012).
Stressor Event (A)
When using the ABC-Z model it is important to remember that the stressor event
in the situation can either be positive or negative. These all depend on how a family
interprets the situation, as well as the type of stressor. There are three types of stressors
within this model, normative stressors, non-normative stressors, and chronic stressors.
There are ways to categorize or define these stressors, each depends on how the event
impacts the family. The first criteria looks at whether the stressor is internal or external to
the family unit. The second being if the event is focused on one member or all of the
members of the family. In addition, the onset of the event can affect how much time the
family has to adapt. Whether it be a gradual onset or a sudden onset. The severity of the
stressor will also play a role in adaptation and whether it was expected or not. Stressors
can also be natural or artificially made. The type of stressor will also affect the
significance of the impact on the family unit. Finally, the perception of whether or not
they are able to solve the crisis situation can determine how the family will react to the
sudden change (Smith & Hamon, 2012).

Normative Stressors
Normative Stressors are events that are natural to the typical family' s everyday
life or a long term transition throughout a family life course (Price, Price, & McKenry,
2010). Daily hassles fall under the normative category. Hassles could include caregiving
demands and pressures that arise from everyday tasks that involve children. Some hassles
can be infrequent or situational, where others are reoccurring hassles of everyday life.
Developmental transitions are another type of normative stressors. These are
defined as the developing characteristics of the young and the social aspects of these
transitions. "Developmental transitions have the potential to result in accumulating
stressors that can be perceived collectively disruptive change and contribute to
psychological distress" (Price, Price, & McKenry, p. 32, 20 1 0) . One of the major
transitions in a family' s life, is adjusting to the period of their children going through the
adolescent years. The key issue for parents is allowing their children to gain independence
and make decisions. The process of letting-go causes potential stressors for parents.
Non-normative Stressors
Families also face stressor events that are non-normative, unpredictable
occurrences that are disruptive to the everyday life. These events are often sudden,
dramatic and have considerable potential to cause chaos in families (Price, Price, &
McKenry, 2010). Most often, these types of stressors are a result of a unique situation
that is unlikely to reoccur.
Off-time developments are classified as a non-normative stressor. These are
typical events that happen at an unanticipated time, which then become disruptive and
cause stress for families . These events could include, retirement, death of an elderly
family member, and becoming a grandparent.
Another category that falls into non-normative stressors can be the initial
awareness or diagnosis of a family member. This would include delinquency, conduct
disorders, attention deficit behavior, physical illness, poor mental health, and birth
defects. Along with a diagnosis parents often experience distress, worry, edginess, and
feelings of devastation (Price, Price, & McKenry, 20 1 0) .
Chronic Stressors
"Chronic stressors are atypical circumstances that occur over extended periods of
time, are difficult to amend, and may have debilitating effects, both for parents and for
the parent-child relationship" (Price, Price, & McKenry, p 34, 20 1 0) . These type of
stressors could include a parent ' s employment that affects their parenting abilities,
poverty, and marital conflict. Another example of chronic stressors could include the
physical, financial, and emotional demands that parents encounter when they have a child
whom suffers from a long-term illness or have persistent abnormal qualities (Price, Price,
& McKenry, 2010).
Resources (B)
Once a family encounters a stressor they must then determine how to manage the
event. Accessing resources is one way of doing this . Resources are defined as "the
potential strengths of individuals, families, and other systems that may act as vehicles
through which parents can obtain what they value" (Price, Price, & McKenry, p 3 5 ,
2010). There are positive and negative resources within a family unit. Resources that are
positive include traits, qualities, characteristics, and abilities of parents that have the
ability to address the demands of the stressors. The negative resources would be the
family ' s vulnerabilities of parents and the parent-child relationship (Price, Price, &
McKenry, 2010). This model contains two types of resources, personal resources and
family/social resources.
Personal Resources
Resources that are considered personal to a family include economic well-being,
education, interpersonal skills, and physical health. Self-efficacy and positive self-esteem
are considered to be personal resources, and they can help empower parents and family
members to manage stressful circumstances.
Social Resources
Social support is one of the most important resources a family can access. Support
helps build an individual' s self-esteem. Social support can also come from community
resources, such as the opportunity for networking and assistance in finding valuable
resources (Smith & Hamon, 2012) . "Having good social support from friends, neighbors,
and family can lead to more positive parenting practices and can minimize the effects of
environmental stress" (Smith & Hamon, p 119, 2012).
Definition of the Situation (C)
According to Smith & Hamon (2012), the manner in which individuals interpret a
stressor is j ust as important as accessing resources when determining how a family will
respond to a crisis situation. "Cognitive appraisal and coping processes are thought of as
mediators of individual psychological responses to stressors" (Smith & Hamon, p 119,
2012) . A families ' outlook on crisis can vary from others. Some may see life changes as
challenges for them to overcome or they might interpret the stressor as uncontrollable and
see it as damaging to the family's well-being.
Stress and Crisis (X)
The previously mentioned parts of the model all determine if a family enters a
state of crisis. A family will reach this stage if they are unable to maintain their usual
family balance because of the stressor event. If a family reaches this crisis stage, it does
not mean that they will not survive it. Often times, families function better after a crisis
then they previously were (Smith & Hamon, 20 1 2) .
/
-8
Figure 1. Reuben Hill' s ABC-X Theory
Conclusion
No matter what developmental disability a child has, the family is sure to
encounter challenges and changes after the diagnosis. It is important for families to
remember that there are resources available for them as long as they are willing to take
advantage of them.
When parents are coping with their child's condition,
understanding what developmental limitation exist,
identifying and accessing necessary specialized care and
medical services, locating community resources and
support, and planning of the future are common demands
described by parents of children with special needs
(Nelson, Goff et al ., 20 1 3 ).
A family ' s experience raising a child with special needs will be
unique compared to those without a child with a developmental disability.
The experience is impacted by their specific situation, the external
environment, and support. Not all families experience the same negative
emotions, feelings, and stressors related to a diagnosis of special needs,
but it is important to remember there can also be positives along the way.
The following chapter will describe the methodology that is used
in the study, including the design of the study, sample, and selection of the
sample, description of the sample, instrumentation/measurement, data
collection, and analysis.

Chapter Three
Methodology
The purpose of the study was to explore the impact of child with one of the three
focused special needs on a family unit. In addition, the stressors within the family were
examined. The emotions and feelings that arise surrounding diagnosis were investigated.
The research questions are as follows.
1. How does a child with special needs affect the family?
The research hypothesis are as follows.
Hl. Additional negative family stressors can arise from having a child with
special needs.
H2. An array of positive emotions can arise from a child' s diagnosis.
H3 . An array of negative emotions can arise from a child' s diagnosis.
Design of the Study
The researcher utilized a qualitative research approach for this study. A
convenience sample of participants engaged in individual interviews with the researcher.
The interviews were guided by the use of the Downey Survey (Appendix A), developed
by the researcher to elicit information used to gain an understanding of how a child with
special needs affected the family unit. Qualitative data were analyzed using the constant
comparative approach. "Qualitative research allows researchers to get at the inner
experience of participants, to determine how meanings are formed through and in culture
and to discover rather than test variables" (Corbin & Strauss, p. 12, 2008).
Sample Selection
Sample selection for this study began after permission was obtained to conduct research
with human subj ects from Eastern Illinois University' s Institutional Review Board, #16-
077. The sample was one of convenience and participation in the study was voluntary.
Participants were recruited from the population of parents served by the special education
program in an elementary school in a small Midwestern town through a letter from the
researcher (Appendix B) . This school housed Kindergarten through 6th grades. However,
the special education classroom served students of a variety of age groups, ranging from
6 to 11 years at the time of the study.
After initial contact with the population, the researcher used the snowball approach to
solicit further participation in the study, asking the parents to recommend other families
that would be willing to participate. The goal was a minimum of six . Upon the agreement
to participate, the researcher determined whether individuals fit the parameters for the
study. The parameters of this study were that participants have a child with special needs.
If individuals were deemed appropriate, a face-to-face interview was scheduled at which
time informed consent was explained (Appendix C) and obtained.
Instrument Description
The researcher developed the Downey Survey after a thorough review of
contemporary literature regarding the topic . The literature includes references by Corbin
& Strauss, Kerr & Mcintosh, and Smith & Hamon. The instrument included open-ended
questions addressing the research questions for the study. Three professors in the School
of Family and Consumer S ciences at Eastern Illinois University deemed the interview
questions valid and appropriate for the study.

Procedure for Data Collection
Parents of children with special needs were asked to participate in this study through
the use of the snowball method. Interested participants that met the criteria for the study
were contacted by the researcher and face-to-face interviews were scheduled. The risks
and benefits of the study were discussed and informed consent was obtained; each
participant was told that he or she could withdraw from the study at any time.
The researcher performed each interview using the Downey Survey. The interviews
were voice-recorded using equipment provided by the researcher. Each interview was
stored in the personal computer of the researcher, to which only she had access.
Data Analysis
Qualitative data were analyzed using the constant comparative approach based on
Corbin & Strauss' s work (2008). The researcher started analysis by transcribing each
interview from the recorded data. As themes appeared in data, either through over-reaching
ideas or the use of specific terminology, they were organized into categories of similar
information. As the researcher moved through each interview she constantly compared new
interview data to existing categories in order to either support or delete categories. Upon
the completion of a qualitative analysis a commonality of thought is identified.

Chapter Four
Results
The purpose of the study was to explore the impact a child with one of the three
focused special needs has on a family unit. In addition, the stressors within the family
were examined .
This chapter discusses the results of the study. Qualitative data were gathered
through interviews with parents of a child with special needs and was analyzed using the
constant comparative method. The design of the study allowed the researcher to better
understand how the family unit was impacted by the addition of a child with special needs.
Research questions addressed the diagnosis of a condition leading to a special need, how
the diagnosis was made, feelings regarding the diagnosis, family stress levels, relationships,
child care, resources, and overall experience with children with special needs.
The research question and hypotheses are as follows.
Research Question
I. How does a child with special needs affect the family unit?
Hypotheses
HI. Additional negative family stressors can arise from having a child with
special needs.
H2. An array of positive emotions can arise from a child' s diagnosis.
Instrumentation
A total of six participants were interviewed using the Downey Survey (Appendix
A). Each question revolved around the families' individual experience with their child.
Current research on this topic lacks information on stress levels and strains on not only
the parent's relationship but with other siblings, family and friends. Therefore, the
researcher created instrument questions based on the lack of information in hopes to
expand knowledge on those topics .
Data Analysis
The constant comparative method was used to analyze the qualitative data (Corbin
and Strauss, 2008) . The researcher first used microanalysis, which is where the researcher
created ideas from a sample of questionnaire responses. Using this method allowed the
research to look for similar responses with in participant's interviews. Common responses
found repeatedly were grouped into broad categories. Responses continued to be analyzed
in broad categories and broke down into common themes. Through the data analysis
process, an abundant of support emerged for the overall research question. In addition, the
themes of: diagnosis, advice, resources and support emerged.
Children's Diagnosis and Additional Needs
Participants were asked one question regarding their child's diagnosis and what
additional needs come with it. Data indicated that three children were diagnosed with
Down syndrome, one Autism, one ODD, RAD, ADHD, and one child in the middle of
the diagnosis process.
Along with the child's initial diagnosis, each child may have unique needs
because of their diagnosis. Two out of three children in this study with Down syndrome
had no additional needs or health concerns. The remaining child had to have corrective
eye surgery along with heart surgery at a very young age. Families noted that heart
defects were a common trait in individuals with Down syndrome. This child also had
digestive issues. Her family has to keep on top of her bowl movements to ensure she does
not become constipated, because it happens very easily.
The child diagnosed with Autism had no additional needs that were present from
the diagnosis. The two remaining children had unique characteristics that presented. The
child diagnosed with Oppositional Defiant Disorder, Reactive Attachment Disorder, and
Attention Deficit Hyperactivity Disorder had a plethora of additional needs. One issue the
family faces on a daily basis is their child having Pica.
The final child had yet to receive a diagnosis; they were currently in the long
process of discovering why their child behaved the way she did. The family has faced an
issue with her speech. They have difficulty understanding what she needs which in turn
makes it difficult to help her.
Diagnosis Process and Feelings
Each child' s diagnosis was made in their own unique way. There are specific tests
for one and observational cues for another, yet parent ' s feelings are the same. Each parent
noted that it is a scary feeling to go through the diagnosis process because of the
unknown. Research shows that parents expecting a child tend to hope that they are a
healthy and typical infant, therefore when they receive the news of a special need, many
emotions come about. Parents often experience feelings of anger, fear, and shock. Some
parents asked themselves "why us" (Kuhn, 2 0 1 6)?
" With our son, we did not receive a diagnosis until he was a couple years old;
the doctors put him through a set of activities and observed his behaviors.
Once we received the diagnosis, we hadfeelings ofsadness and anxiety for
quite a while, until we fully educated ourselves on Autism. "

"Once we found out we were pregnant the doctors ran blood work since I was
over 35. The test showed that our baby had a 1% chance of having Down
syndrome. We wanted further testing so we went to Champaign for the gender
determination. They told us it was a girl and it was a quick downslide from then
on. They told us she had a heart defect that would require surgery, this is a
major marker for Down Syndrome. They did a procedure called an
amniocentesis to test her chromosomes. We had to wait an agonizing 5 days for
the results. They called and said yes she had Down syndrome and Turner
syndrome and we were instantly sad and angry. "
"The diagnosis process was a breath of fresh air because we finally
knew why our daughter acted the way she did. We finally had the answer
we had been looking for. Once we received the diagnosis then we could
go educate ourselves on how to manage and handle her behaviors"
"We didn 't know or expect him to have Down syndrome; all of our tests
came back negative. We did not know anything about the Down
syndrome. We were under the impression he was a typical child. We did
not know until the minute we had him, then we were told about it. It was
not a nice way to find out but that is how it happened. We were upset,
scared, mad, and I think we were feeling just about every feeling you
could feel"
A diagnosis can be made with ease or it can be a lengthy process. This process
can be very stressful for parents as well as siblings. Going through this stressful time can
be hard on a family but several participants noted that finally receiving the diagnosis and
allowing ourselves to do research helped lessen the stress.
Communication of Diagnosis
Communication of diagnosis varied from family to family . The maj ority of
families felt the need to share the diagnosis right away with family and friends. They felt
that is was important for all members in the child' s life to know and understand the
diagnosis . They wanted to educate these individuals on the diagnosis as well as how to
care and interact with their child. This also gave family members an idea of what to
expect in the future .
" We told all of the family right off the bat, it was somewhat sad I
remember crying a lot every time we told somebody. Everybody was
saying do not worry about it, everything will be ok and we will still love
him. Family was eager to work with them and learn. His grandparents
were looking stuff up on the internet to see what we needed to do and
what kind of things we needed to work with in case he gets behind so we
can keep him on track. One set of grandparents were out buying black
and white books and working on that. They wanted to make sure we had
all the things we needed and that we knew what to do. "
One family in particular took a different route to sharing the diagnosis. All parents
take this type of news differently. It can be hard to process for the parents so it may
interfere with when and how they share the news .
" That took us some time. Because it was super important because I
did not want to tell anybody until we had fully come to terms with it. I
did not want the "everything happens for a reason " or just all those
comments because you are angry and sad and I did not want to lash out
at someone like "yeah right ". I wanted to come to terms first. Of course
we told my parents but I lost a best friend at the time. I had told her we
had some rough news and I needed to process it before we could talk
about it. I probably took two weeks to just sit with it and then I checked
in with her and told her I was ok but she could not understand why I
took the time to. So anyways, our .friendship was completely severed at
the time because she said I was being selfish and not talking with her.
She said that even then when I told her that this is why, because !found
out my daughter has down syndrome and a heart condition and has
surgery, she even then didn 't back down or was more understanding.
That was the first time we realized yeah friendships are going to change
but that is just the part of it. It is not as ifanybody we told said anything
that was harsh. We just needed to come around to ourselves first off "
Strain on Siblings, Family, and Friends
In a situation such as having a child with special needs, parents, siblings, family,
and friends can all be affected and all in different ways. Having a child with special needs
who requires additional care and attention from the parents can place a strain on the
parents and other sibling's relationship. Families with a child with special needs may also
not have a lot of spare time for extended family and friends, which may cause distance
between individuals.
"I think we were both on the same page with our emotions. It was a
roller coaster but we communicated well and I think that was super
important. Family, I think there was not a strain I think it got a little
frustrating because my parents were still saying things about abortion
type of things. Like you guys, that 's a lot of work, taking on a lot type of
thing. I finally had to say were are not doing that, it 's not an option and
we are moving on. Friends, I lost a friend but I gained friendships that
I had originally lost contact with but then they were there to help and
be by my side and help with my baby shower. "
Not all families face this type of strain. In some circumstances, families may grow
and become closer and a stronger unit. Participants noted that they received help from
family and friends who went above what they could have ever hoped for.
"! feel that our son 's diagnosis brought us much closer together because it
was a time where we needed each other for support. Our other children love
their brother very much and their relationship has not changed. Our family
and friends were wonderful; they researched Down syndrome themselves and
learned all about the diagnosis in order to understand him"

Experience with Special Needs
When a family's child is diagnosed with special needs, they can be terrified, but if
a parent has experience working with a child with special needs they may feel more
educated or prepared. Half of the participants reported that they had no experience
working with special needs before their child was born.
"No real experience with children b ut my wife and I both used to work ·with
:,pecial needs adults. "
The remaini ng half of the participants had \Vorked with or had been around a child
with special needs. They noted that it was a blessing to have this experience because they
had an idea of what the d iagnosis entai l e d for t h e chi ld. Partici pants also felt scared and
worried because they have seen how some children behaved due to their diagnosis.
" We had some experience working with a child with special needs and that
scared us when we were told of her diagnosis, Down syndrome, because we
instantly thought she would he just like this child we knew, whom was severely
disabled and had anger issues. "
Stress Levels
It is very common for families raising any child to experience stress. When that
child has a diagnosis and requires extra care and attention it is more than likely the
parents will have higher stress levels than those whom have a child without a diagnosis.
Participants noted that these stress levels can decrease over time.
"Of course, we experienced higher stress levels, but what parent
would not. Once you get into a routine and become more aware of
what it takes to care for the child. you tend to see stress levels
decrease. "
Participants noted that many factors could be linked to the increased stress levels.
Factors such as doctors ' appointments, health concerns, and behavioral issues are j ust a
few mentioned. All of these factors require more of the families' attention and time,
which leads to less time for daily tasks .
" . . . We had three kids. She is not a big stressor. It is mostly the special
needs aspect with the doctors ' appointments we have to go to, along
with speech therapy, physical therapy, and occupational therapy. It is
not as easy with an average child WE have come to adapt to her and
how she is. We can communicate with her even though she cannot talk
very well, we know what she is saying. Most people would not be able
to understand but we can because we are with her all the time. "
Partner Alone Time
Any family having young children, parents find themselves with little alone time,
or not as much as before . As stated before children with special needs may require a lot
of attention and supervision, which makes it hard for parents to have time to themselves.
Participants noted that they had to be creative to get any partner time .
"Pretty hard and still is. We just tell ourselves that she is almost
like a 2. 5 halfyear old so it is hard to find people we trust for a long
period of time because she can be so needy and cannot entertain herself
until recently she can play with her kindle a little bit I know for the first
month was always the hardest, it was with Henry too. You think yeah I
cannot do this and James and I were just constantly feeding and
changing diapers and then it starts to let up a little bit and now we can
breathe and go outfor dinner. Your baby is usually easy to tout around
and they sleep while you eat. However, yes, it is definitely something we
have to work hard on to get time together even if it is just a family walk
or in the evenings after the kids go to bed at 1 0. We always say it 's not
always going to be like this and you have lots offamily help. "
A common response for participants was, "what alone time". Participants said that
in the beginning you do not get very much alone time or none at all . You have to set a
routine for yourself and the child. If you get the child on a routine, then it is easier to
have time by ourselves . One participant noted that it is very important for parents to take
care of themselves and their relationship so they can provide the best care for their child.
Daily Care and Child Care
Along with any child, there are typical tasks that parents help children with but if
a child has special needs, there may be additional care they require. The maj ority of
parents noted that their child requires more doctors' appointments and checkups than a
child without special needs does.
"The care for him is pretty typical to any other child, just a few more doctors '
checkups and that 's it ".

Parents also noted their child requires a strict routine in order to keep them from
"falling apart" . Having a strict routine helps their child to know what they must do each
morning when they wake up and each night before bed. Parents who have a consistent
routine notice their child will transition better to new tasks or places.
" We keep a very strict routine for him because that works best for him. It
helps us to get him ready each day and that way he knows what to expect and
where he is going. "
Other parents noted that their child could function well on their own with maj ority
of day-to-day tasks but need to be reminded to perform them. Children who cannot
perform these tasks have the assistance of their parents while using the restroom,
brushing teeth and getting dressed.
Additional Support and Resources
Parents of children with special needs have the opportunity to receive help as long
as they want it. Resources that parents can use include their child' s doctor, school
teachers, and their therapist ' s . There are other resources and support for families but
these were the resources mentioned by participants.
" We use the birth through two programs to help with her therapy outside and
inside our home. Her doctors in St. Louis at the Children 's Hospital are also a
great resource and support. "
There are participants who did not use many resources but relied on family and
friends for a lot of support. Having the help from resources and other individuals,
participants can experience less stress when caring for their child.
" We did not really use many resources other than her teacher 's and doctors.
In a small town, there is not a lot of help outside of those individuals. "
These resources are not only beneficial for the family but for the child themselves.
Using these resources, children can meet and interact with other children sharing the
same diagnosis. In addition, parents can meet other parents whom have experienced what
they are going through. Communication with other families were often more beneficial to
participants than a professional because they live the same life everyday as the
participants do.
Strained Parent Relationship
Going through a stressful situation such as having a child with special needs,
parents can face a lot of emotions and stressors that can affect their relationship with their
partner. The maj ority of participants noted that they felt the diagnosis brought them
closer to one another.
"As I said earlier, I think the diagnosis brought us together as a couple and as
afamily. "
They mentioned that one parent tended to keep the other calm in stressful times. A lot of
the time participants were experiencing the same struggles and working together got them
through it as a team. They noted they relied on each other a lot to get through difficult
times, especially when their child would cry and they could not figure out how to calm
them down.
"My husband seemed to be calmer than me and when I would cry he would
talk to me and calm me down. He would tell me that everything would be ok. "
Siblings
Homes that have other children besides the child with special needs often wonder
how the siblings will be impacted. All participants who had multiple children noted that
the addition of their special needs child had a positive impact on their other children.
Parents saw their children become more helpful and understanding of individuals who
have disabilities.
"Her older brother was very understanding when it came to our attention and
having to focus on her quite a bit. She demanded a lot of time from us and he
knew why. "
Participants whom had older children found they were very helpful with their
sibling when it came to accommodating their needs. Siblings wanted to help take care of
the child alongside their parents.
"His siblings have been great. They are all older and were a great help when
he was younger. "
Positive Experiences
Positive experiences happen with any child whether there is a diagnosis present or
not. Participants spoke of several positive experiences that affected their whole family
and friends, not j ust themselves.
"I have seen great sides ofpeople because ofhim. He brings out the best in all ofus. "
Many participants spoke of emotional and mental experiences not j ust the
physical ones. Parents saw themselves change with how they interact with their child and
others around them. The noticed themselves being more calm and relaxed when a
situation is out of their control. Although they do experience stress occasionally their
child reminds them that nothing is too big to overcome.
"I think as a whole family we have a little more patience and understanding of
those who are different from us. When he accomplishes things it is an
accomplishment for the whole family. "
Personal Experiences
Participants were asked what they would like to share about their experience. All
participants suggested that families should do their research on the child ' s diagnosis.
Educating yourself and advocating for the child is the best thing a parent can do . Also,
looking for resources in the families' community or surrounding towns . Parents should
reach out for help when they need it. No parent should be ashamed to ask for help.
"Do your research; there is help out there you just have to take advantage of it. "
Participants wanted to share their experience with not only other parents of
children with special needs but also all parents. It is very important for families and
individuals to understand and remind themselves that they are j ust another person.
"They are no different from anyone else; things just take a little longer. "
Whether a child has a diagnosis or not, they all develop and mature at their own
pace. Children will hit their milestones when they are ready to, it may not be when they
are expected to but they will . Several participants noted that moments like these are
celebrated in families of children with special needs .
Advice
In unknown situations people often seek for advice from others whom have
experienced what they are about to go through. Participants were asked to share advice
they would give to other parents whom are going through the diagnosis process or just
finished it.
"My biggest p ie ce of advice would be to not get disco urage d. That was the
hardest partfor me. It was hardfor me to come to grips with the fact that my
child would not be able to enjoy a "normal " life . .,
Other participants had simple advice to share with parents .
BREA TH. . and relax and don 't borrow trouble before it 's had, just take
. .
everything in stride!
Advice from other parents can be very helpful because they have experienced
situations with their child and have answers that other parents could benefit from. Parents
can share what worked for their child to others in hopes that it will help them.
Summary
The current study used interviews to collect information on how a child with
special needs affects the family. Despite the differences in diagnoses from child to child,
families in this study reported similar feelings regarding the process.
However, children with the same diagnosis may not have similar needs. Each participant
noted that it was important for them to educate themselves on the diagnosis, and reach
out to find resources such as other families with the same diagnosis. Conversing with
other families who have a child with the same diagnosis was said to be very beneficial .
Through this qualitative data analysis, the overall research question, how does a
child with special needs affect the family, was answered in a variety of ways . In addition,
the hypotheses were supported with reoccurring responses in regards to positive and
negative emotions and family stressors.

Chapter Five
Summary of Study
The purpose of this study was to discover how a child with special needs affects
the family. Through the study one research question was answered and three hypotheses
were supported.
Research Question
1. How does a child with special needs affect the family unit?
Hypotheses
H l . Additional negative family stressors can arise from having a child with
special needs .
H2 . An array of positive emotions can arise from a child' s diagnosis.
Discussion
Overall, six participants participated in the current study. Each participant had a
child with special needs . Three of the participant' s children had Down syndrome, one had
Autism, one had ODD, ADHD, and RAD . The final child was in the process of receiving
a diagnosis.
Research Question #1 : How does a child with special needs affect the family?
It is difficult to answer this question with one specific answer. Families were all
affected differently by the addition of their child. Some experienced similar diagnoses,
health concerns, and childcare but depending on the amount of support, resources, and
help, families can have different stories.

Hypotheses #1 : Additional negative family stressors can arise from having a child
with special needs.
All families experienced an increase in stress levels in the months following a
diagnosis. Many factors play a role in parents increased stress levels and depression such
as, excessive caregiving demands, lack of child responsiveness, and unusual behaviors
(Cowen & Reed, 2002). Stress tended to level back out to normal once families did their
research on their child's specific need and managed the day-to-day experiences that came
along with a child needing intervention of some type. Resources and outside support were
reported as beneficial to families when questions arrived.
Hypotheses #2 : An array of positive emotions can arise from a child ' s diagnosis.
Once negative emotions were dissolved the families in this study reported that
they convinced themselves they were given this child for a purpose, to teach them a life
lesson and patience. Parents often give credit to their child and the diagnosis for their
personal growth (Staats et al, 2015). Not only did parents experience these positive
emotions, but siblings did as well. Parents reported that siblings showed more love
towards a sibling with special needs. They were very understanding that the child needed
more time and attention from p arents.
Hypotheses #3 : An array of negative emotions can arise from a child's diagnosis.
All families reported having similar feelings and emotions after the diagnosis.
Found in the literature many parents report they encountered an array of emotions
including stress, disbelief, sadness, anger, and confusion (Staats, et al, 20 1 5). Many
participants reported being scared and fearful of the diagnosis. They were not sure how
they would care for the child because they knew nothing about the diagnosis. A few
parents asked themselves why they were given a child with special needs, a s if i t were a
punishment. However, participants reported that negative emotions subsided after they
educated themselves on the diagnosis and reached out for support.
Limitations
One maj or limitation to this study would be the sample size. The sample size used
for this study was six ( 6) parents of children with special needs . Due to this small sample
size, the results only pertain to these participants.
Recommendations for Future Research
This study introduced new insight towards children with special needs and how
they influence the family unit. However, future research should use a larger sample size
in order to gain a more realistic take on how families were affected with the addition of a
child with special needs. In addition, participants should be recruited outside of a small
Illinois town. This will allow the researcher to see how families from larger towns or
cities adj ust to the additional needs of a child. For example, there would be more
resources for the family in a larger area, which then may decrease their adj ustment and
stress levels.
In future research, the study should focus on a wider variety of developmental
disabilities. This research study focused solely on Autism, Down Syndrome, and Cerebral
palsy, as these diagnoses were prevalent in the geographical are of the study. This will
help to gain more knowledge about other family ' s adj ustments that have a child with a
different diagnosis. With further research, more families and professionals will know
how to educate others on developmental disabilities, a specific diagnosis, and how to
adj ust to this family change. Siblings themselves should be interviewed to gain their
perspective on the family unit. Parents often think they know how their children feel but
interviewing the siblings themselves may reveal a different story. In addition, researchers
should identify resources available to families to assist with the child, medical issues,
behavioral issues, and negative stressors that families may face.
Recommendations for Professionals
Professionals in the field of education, childhood intervention, and other field that
work with individuals, families and communities should be thoroughly educated on
children with special needs and their family. It is important for professionals to be aware
of factors such as the diagnosis process and the common characteristics of each
diagnosis. These individuals may be those educating parents and family members on
specific care for their child and resources available to them for assistance.
It is also very important for educators, especially those in special education, to
have the knowledge of these factors as well. Educators are those who work one on one
with students in the school system as well as with their parents whom continue teaching
at home. Special education teachers are often those who implement intervention plans
within the classroom and see what additional services they may need. Teachers also work
with therap ists within the school system who provide physical, s p eech, and occupational
therapy for at risk children.
Professionals in the family services field may offer counseling to families who
have trouble with the adjustment and need additional help in finding services. That is
why it is important for individuals working in this field to have an understanding of
developmental disabilities and how to help parents cope with stress.

Conclusions
This study focused on the effect of a child with special needs on a family. As
special needs continue to be a growing topic more professionals should be educated on
developmental disabilities and how the whole family is impacted. There is limited
research on the topic of children with special needs and how their family unit is affected
in regards to stress levels, care of the child, and relationships within the family. Research
that has been done focuses solely on stress levels of the parents verses the family as a
whole, including siblings, extended family members, and friends. The results from this
study has provided a better understanding of how the family adj usts and changes with the
addition of their child with special needs.

Appendix A: Downey Survey
1 . What diagnosis was your child given?
a. What additional needs come with the diagnosis?
2. Walk m e through the process o f the diagnosis.
a. Feelings
b. What were you thinking?
3. Did you communicate diagnosis with others?
a. If so, how?
b. If not, why not?
c. What did this feel like?
4. D i d the diagnosis place a strain on:
a. Partner
b. Children
c. Family
d. Friends
5. What type o f experience do you have working with or caring for a child with
special needs prior to the birth of your child?
6. What did you notice regarding your stress levels once your child was born?
7. What does alone time with your partner after your child was born look like?
8. What does the daily care for your child look like?
a. Who provides care for your child?
9. What type of additional support from resources outside of family and friends that
you receive?
10 . D o you feel that your relationship has been strained due t o your child's diagnosis?
1 1. Does the child with special needs affect the sibling, if so in what way?
12. What positives have you experienced with your child?
13. What would you like to tell others about your experience?
14. What advice would you give a family that just received a diagnosis for their child?
Appendix B
Hello Parents/Guardians,
It is that time, the start of another school year ! I hope you all had a wonderful and
exciting summer with your child/children. My name is Taylor Downey and I am a student
at Eastern Illinois University and I am needing your help ! I am currently working on my
Master' s degree in the Family and Consumer Sciences program.
As a graduate student we have the option to write a thesis in order to graduate and
I am doing such that, which is why I am reaching out to you. My thesis topic is on
Children with Special Needs and how they impact the family unit. I am looking for
volunteers to complete an interview with me in order for me to gain more knowledge
about how your family was impacted.
This interview is completely confidential and no names will be released within the
thesis. Interview responses will be used to gain a better understanding of how different
families are impacted in their own unique ways. Your help will be very beneficial to my
thesis. At any time throughout the interview you may withdraw if you feel necessary.
If you agree to participate please sign below and include your contact information
that you wish to be reached at. Return back to school with your child by August 24th .
Also, if you have any questions about this proj ect please feel free to contact me via
phone, text, or email.
Thank you for your help and have a great school year !
Taylor Downey
(2 1 7)-663 -25 84
tndowney@eiu. edu
Please circle how you would like to be contacted : Call or Text

Appendix C
C ONSENT TO PARTICIPATE IN RE SEARCH
Children with Special Needs and the Fam i ly
You are invited to parti cipate in a research study conducted by Taylor Downey and Dr. Miki
Sherwood, from the department of Family and Consumer Sciences at Eastern Illinois University.
Your participation in this study is entirely voluntary. Please ask questions about anything you do
not understand, before deciding whether or not to participate. You have been asked to participate
in this study because you are the parent of a child diagnosed with a special need.
The purpose of this study is to explore how having a child with special needs affects the fami ly.
In addition, the stressors within the family will be examined. The emotions and feelings that arise
surrounding a diagnosis will be investigated.
If you volunteer to participate in this study, you will be asked to complete an interview with the
researcher and describe how having a child with special needs has impacted your family. All
interviews will be recorded and kept confidential by the researcher.
At any time you feel uncomfortable you may withdrawal from the study and the interview w i l l
stop immediately. Anything recorded prior t o withdraw will be deleted and not used for the study.
Any information that is obtained in connection with this study and that can be identified with you
will remain confidential and will be disclosed only with your permission or as required by law.
Confidentiality will be maintained by means of keeping all interview recordings and transcribed
records contained on the researcher' s locked personal computer.
Participation in this research study is voluntary and not a requirement or a condition for being the
recipient of benefits or services from Eastern Illinois University or any other organization
sponsoring the research proj ect. If you volunteer to be in this study, you may withdraw at any
time without consequences of any kind or loss of benefits or services to which you are otherwise
entitled. There is no penalty if you withdraw from the study and you will not lose any benefits to
which you are otherwise entitled .
If you have any questions or concerns about this research, please contact:
Taylor Downey, Primary Investigator, (2 1 7)-663-25 84, tndowney@eiu .edu
Dr. Mikki Sherwood, Co-Investigator, (2 1 7)- 5 8 1 -6349, mlsherwood@eiu.edu
If you have any questions or concerns about the treatment of human participants in thi s study, you
may call or write :
Institutional Review Board

Eastern Ill inois University
600 Lincoln Ave .
Charleston, I L 6 1 920
Telephone: (2 1 7) 5 8 1 - 8 5 76
E-mail : eiuirb(ahvww . eiu.edu
You will b e given the opportunity to di scuss any questions about your rights as a research subj ect
with a member of the IRB . The IRB is an independent committee composed of members of the
University community, as well as lay members of the commun ity not connected with EIU . The
IRB has reviewed and approved this study.
I voluntarily agree to participate in this study. I understand that I am free to withdraw my consent
and d iscontinue my participation at any time . I h ave been given a copy of this form .
Printed Name of Participant
S ignature of Participant Date

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Eastern Illinois University

Children with Special Needs and the Effect on the

FOR: Graduate Candidates Completing Theses in Partial Fulfillment of the Degree

RE: Preservation, Reproduction, and Distribution of Thesis Research

Your signatures affirm the following:

Gradu�\e Candidate 'Signature ' Faculty Adviser Signature /l

Printed Name Printed Name

raM(l�w O.Y\cJ �SU/l£A 1 -.a- 11

SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS

IN THE GRADUATE SCHOOL, EASTERN ILLINOIS UNIVERSITY

I HEREBY RECOMMEND THAT THIS THESIS BE ACCEPTED AS FULFILLING

THESIS COMMITTEE CHAIR

Children with Special Needs and the Effect on the Family

Eastern Illinois University

graduate. I love you with all my heart.

school. You have all made my time at EIU a memorable one.

characteristics depending on their child's diagnosis.

Table of Contents 5-6

Need for Study 7

Chapter 2: Review of Literature 11

Special Needs 11-15

Relationship Strain 18-20

Resources Available to Families 20-21

Family Stress Theory: ABC-X 21-25

Chapter 3: Method ______ 27

Design of the Study 27

Procedure for Data Collection 29

Interview Responses 31-44

Chapter 5: Summary of Study 46

Recommendations for Future Research 48-49

Recommendations for Professionals 49

Appendix A: Downey Survey 51-52

Appendix B: Welcome Letter 53

Appendix C: Informed Consent 54-55

children (McLennan, Doig, Rasumssen, Hutcheon & Urichuk, 2012).

Need for Study

with special needs.

Purpose of the Study

emotions and feelings that arise surrounding a diagnosis were investigated.

How does a child with special needs affect the family?

H2. An array of positive emotions can arise from a child's diagnosis.

H3. An array of negative emotions can arise from a child's diagnosis.

Definitions of Key Terms

Terms used throughout this study include:

1. Special needs- "a wide range of physical disabilities, medical conditions,

intellectual difficulties, or emotional problems, including deafness,

blindness, dyslexia, learning difficulties, and behavioral problems" that

negatively impact functioning in some manner (dictionary.com)

2. Operational Definition of Special Needs- "Children with identified

disability, health, or mental health conditions requiring early intervention,

special education services, or other specialized services and supports"

3. Mild- "A mild intellectual disability is defined as an IQ between 50 and

70. A person with a mild intellectual disability participates in and

and organize their daily life. " (CDDH.monash.org)

4. Moderate- "A moderate intellectual disability is defined as an IQ between

3 5 and 50. A person with a moderate intellectual disability understands

daily schedules or future events if provided with pictorial visual prompts

such as daily timetables and pictures and may develop independence in

personal care." (CDDH.monash.org)

5. Severe- "A severe or profound intellectual disability is defined as an IQ

below 35. A person with a profound or severe intellectual disability

requires lifelong help with personal care tasks, communication and

accessing and participating in community facilities, services and